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Living With Cerebella Ataxia

I Have anti GAD Associated Cerebella Ataxia.

I have anti GAD associated cerebella ataxia. It has wrecked my life. I have to travel to the Royal London Hospital every six weeks to spend five days having all my blood churned through a plasma exchange machine (if available, it was delayed by five weeks this time as if things aren’t hard enough without having to battle to get into hospital) which draws all the plasma clogged up with dodgy anti bodies, and replaces it with fresh clean plasma. This is for the foreseeable future. For a while I can function at a reasonable level, have some independence and do my best to live normally. But my normal is far from how it was in 2004 before all this kicked off…. 

I wake at 7am each morning, no matter what, so that I can take anti sickness and dizziness tablets. 

You have to understand that this condition is a 24/7 life sentence as not for one second are you off the hook, or unaffected. Simple things, such as turning your head to react to a sound provoke a reaction. 

You have to constantly move your head to achieve a “still” position when watching TV, if you need the loo logistics have to be considered. The phone rings and it’s out of reach. Damn. 

Most other conditions can be “forgotten” about, even if only for the duration of a film or a match on the telly. Ataxia, when combined with Nystagmus simply can’t be erased, however temporarily. They never tell you this. You just have to work it out for yourself. 

Luckily the anti sickness thing also has sedative qualities so even if the morphine (or alcohol) hasn’t given me a pain free sleep the Cyclizine means I can relax in a semi torpor whilst listening to Today on Radio 4. Usually they are discussing something which makes me curse the Lib Dems and remind me why I hate the Tories so much, but I always find it stimulating fare, it’s important to keep the old grey matter in order after all. 

I was a teacher and the loss of my job has been an absolute killer, I hung on in total denial for a couple of months, even attempting a totally farcical and ludicrous “comeback” a couple of days after leaving hospital. I got as far as the car park. 

It’s important, when you get the news to actually take on board what the doctors say, no matter how unpleasant or how crassly the insensitivity of the physician in question. 

The so called Neurology Department at Hull Royal were alerted to possible problems in March 2004 by my Diabetes Consultant, who marries supreme professionalism with humanity, an all too rare thing amongst the medical “profession”. 

The Head Honcho, a misogynistic and arrogant little nobody who ended up in a Hospital where, if you can spell “Neurology” you get the gig, deigned it beneath him to see me, fobbing off this female doctor with a patronising flick of his pen, meaning I had no idea what was going wrong, even convincing myself it was some kind of stress thing. 

Eventually, after collapsing at work resulting in an ambulance attending (great craic for the kids) , and then literally crawling into school one morning, hanging off the walls in best drunken like manner I decided I better go to A and E as my head felt like it was about to roll off, and my legs became uncontrollable, not the best combination for teaching let alone driving home (which I did, the last time ever behind the wheel).

Cue the NHS proving why it’s a World Class organisation as MRI scans, a lumber puncture and other various tests were completed in record time. 

Trouble was the Consultant analysing them bore an uncanny resemblance to Dr. Nick in the Simpsons. 

Unfortunately the similarities ended there as this guy made Matt Groening’s comic creation look like Christiaan Banaard on a dynamic hot streak. 

His answer to everything was; “Hmm… I don’t really know”. 

On my fourth admission, the Head of Department, he of the flicky pen, came around with a bunch of students. 

Whilst patronising and putting down the women, plus joshing with the men he told me I had progressive Cerebella Degenerative Ataxia. I would never get better, only worse and as for work “Forget about it”. 

There’s no more to be done, we will monitor it and now fuck off cos we need the bed. 

I made the last bit up, but it was basically the gist of what he was saying whilst he addressed the students, barely looking at me.

“I’ll sort the Life Assurance pay out”, was his parting shot, an attempt at showing concern in front of the acolytes. 

Through tear-stung eyes; “Can you do anything for the nausea…” but the curtain being ripped open drowned out my question as he went on his way. 

Where was I? Oh yes, I get up before 9am no matter how I feel. This is an important line in the sand, a manageable yet challenging target.

I suppose you could say that in my previous life I set myself high standards, and any challenge I would take it on, from going to University at the last minute with no where to live, to producing, directing and choreographing a school play with only two adults to help me. With wild success. And modesty is another of my personal strengths. 

What I’m saying is that I approached this thing from all the wrong angles to start with.

I saw it as some kind of battle with the disease, and one which I jolly well would win. 

But, over the course of time I woke up to the reality that it doesn’t work like that and as a result I became severely depressed, ending up in the Psychiatrist’s office just a year after it happened. 

I now set myself little and manageable goals, but challenging ones all the same. Being involved in the Labour Party and Hull Samaritans has been a lifesaver, giving me at least the illusion of making a difference. 

Exercise, for me is the key as you get the obvious physical benefits whilst the mental positives are too may to list. “I can’t be arsed isn’t an excuse”, is my mantra if I’m feeling a bit demotivated. 

I was asked to say how this has changed my life. 

Where do you start? Everything else that happened in my life was either enhancing, or something that you could sort out one way or another. 

Example. My Mum died in horrid circumstances when I was 18 and although it was bloody hard, I figured a way of coping in the initial aftermath and devised a conscious strategy of how I would come to a stage where it wouldn’t be THE thing about who I was and why. 

I used the positives and gathered strength from those around me, even though it was something I basically had to do on my own, and I went on to be happily married with a young son and do an important and worthwhile job. 

But this, Ataxia robs you of control and above all of positive aspirations and ambitions. 

I changed schools in 1999, going on to turn around a failing Department, achieve OFSTED success and build positive relationships in a challenging environment so I set myself the goal of making Deputy Head in another school before I turned 40.

In my job people listened to me (whether they wanted to or not, probably the later) and what I said and did mattered. 

In addition I was very well paid. People who say money doesn’t matter usually don’t need to worry about it and the loss of 70% of our income is a bitter pill on top of everything else. I thought we had put the being skint days behind us when we left University, alas not and every penny has to be accounted for. 

Because we are not a “Hard Working Family”, any enhancements to the tax system which benefit the working poor never filter to us. The politically motivated Tory cuts hit a family like ours disproportionately hard. 

Ataxia strips you of authority as you become completely reliant on others, and in addition I find myself a bit paranoid and see slights where non exist. 

My ex pupils have been a great source of inspiration, love and support, yet in a perverse way it kind of rubs in what I’m missing, but perhaps that’s a curmudgeonly attitude and I am grateful. 

What else? Well, if I had my time again at this lark, I’d be a little less gung ho and unrealistically positive as I’ve cast myself in the role of Survivor, Fighter, He Never Lets It Get To Him, and the gap between how I’m presenting myself and how I actually feel is almost getting to be unbridgeable. 

But I would never become a “professional” in the illness stakes either, as with some people it’s the thing that defines who they are when interacting with others, almost as if it gives them a defined an important role. 

Last but by no means least, is the effect on your partner. To see your lifelong soul mate suffer must be bad enough, but then for your role to be subsumed to their illness must be a bitter pill and resentment, no matter how well hidden must be an issue. 

Things like if they fall ill the question isn’t “How are you?”, but “How are you going to manage looking after everyone?” 

It becomes all about me, see? 

Becoming someone’s carer at 44, when you were their lover and best friend is a terrible change for anyone without Social Services not giving two hoots, as when they come around they see Middle Class suburbia and think everything must be hunky dory. 

We are below the accepted definition of poverty, but because we had the Mortgage sorted by the Assurance policy they assume we must be doing fine and why are we wasting their precious time? 

Advice? That’s difficult. I generally do a good line in arrogance but in all honesty you can’t see into someone’s head to predict how they would react. 

For myself, I won’t compromise on certain things such as being active in the Labour Party and Samaritans although I can’t do prison visits much anymore, watching City, going to the cinema, gigs and exercise, unless it’s totally impossible. Even if I don’t feel like it, I do it and always feel better for it. 

At the end of each day I just count my blessings, my wife, son plus wonderful family and friends and try to avoid the “why me?” thing as often as humanely possible.

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About dermotrathbone

Writer and co author "Through Red Lenses". Activist Unite the Union, Save Our NHS Hull. Fan of Yorkshire County Cricket Club, Hull FC, Munster and Ireland Rugby. Views are mine alone and may not reflect the organisations concerned.

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  1. Pingback: Hull Royal Infirmary Acute Assessment Unit Is Not Fit For Purpose « Dermot Rathbone's Blog - April 21, 2012

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